Day #196

We got muddy today! When I got back from the college we took the girls for a little walk down by the creek. We were practicing "walk with me" tracking how many times they took our hand and walked willingly or if they tried to fight and pull away. Today there were no occurrences out of any of the opportunities we gave them, yay! I might be able to walk with them without the harnesses soon. These are Josie's feet by the way, she went ankle deep in the creek mud going after her little stuffed bird she threw in. I am a firm believer that kids are supposed to get dirty! :D

Day #195

Shelley you slave driver! Just kidding, we love you! Pam took this picture of Josie after she had fallen asleep right at the table during session today. Doesn't she look so angelic?! Sometimes a girl just needs a power nap.

Day #194

Josie read her name today! So exciting!!! She was working on a program with Shelley when she looked over at the lesson data sheet and started spelling "J-O-S-I-E" then said "Josie"! She spelled and recognized her name!!! I can't express enough to you how big of a deal this is?! There aren't enough exclamation points!!! :D

Day #193

No photograph today, I don't think you would want to see a photograph for what I am about to tell you. We had our first fecal smearing incident this evening, NOT pretty! Maeve decided to take her diaper off and well you can imagine the rest. I hope this does not become a habit but I have to say she seemed quite pleased with herself afterward. I tried to give as little attention as possible for it, granted I had to clean her as well as the table in their bedroom and part of the deck (sounds like she was at it a while, not the case, trust me she is FAST!)  but I still tried to give her as little attention as possible for doing it. I have to admit that it was probably my fault for not being on top of her having a messy diaper though in my own defense I must say I cannot be everywhere all the time! I hear about this a lot from other autism parents and do not think it was an enjoyment or sensory satisfaction she got from doing this. I think she was messy, did not like being that way so was trying to clean herself, ended up with it on her hands and wiped them off on the nearest available surface. Maybe this is an indicator that she is ready to begin potty training, not wanting a dirty diaper on her is a good step. Maybe she was creating poop art...nah! I have to see some sort of humor or light at the end of the tunnel in this, if I didn't I would be totally grossed out.

Day #192

 

Sunday morning pancakes with my girls :D

We were all still in our pajamas with bed head but it is a little tradition of ours to have warm, gluten free, flax seed pancakes with a splash of vanilla in the batter and always lots of butter and syrup on Sunday morning...just feels like a BIG HUG when you eat them. Maeve is actually eating them now, it has taken a while to get her used to them but time does wonders when you are patient. Josie usually eats until the thought of taking another bite makes her gag. I find it is important to create traditions for the girls, to create memories they can smile about when they are older. Who knew pancakes were so powerful?!

Day #191

Love those dimples! After I took this picture I realized just how much Josie's face is maturing, it isn't a little baby face anymore. She is starting to look like such a big girl now...waahhh! My baby is growing up!

I have tried to keep things low key today and even though it has been mellow here I have had to put Maeve on two time outs already for hitting. She is defaulting to hitting whomever and whatever is nearest to her when she gets frustrated. She hit Josie twice and poor Liam kitty once. I don't know if time outs work for her but it gives separation between the girls and a few moments for her to regulate herself. Chew tubes don't always work and sometimes she is just too agitated for joint compression or massage of any kind. I encourage swinging at these times as well which seems to calm her down the best. I wish I knew what was going on inside her at these moments!

Day #190

I wonder if he realizes how much the girls truly need him around? Maeve is sitting there completely content wearing daddy's hat, holding daddy's hand, calm and relaxed. Josie gets very hyper and playful during his visits but he seems to have a calming affect on Maeve. I really do wonder if he knows how much they love him? I have to say that he is a very self centered person who decides to play "daddy" when it suits him but it has to be when he feels going out with his friends is not more important. I have also noticed that the day after a visit like this throws Maeve for a loop and she becomes irritable, easy to strike out and overall more intense. I don't know...I am fed up with his inability to be the father the girls need, his penchant for finding excuses why he can't come see them, and his total lack of concern for their well being. I also recognize how much the girls enjoy having him visit. If I step back from my own feelings and look at it from the girls perspective I can understand their wanting daddy around but I am to the point where I can justify telling him to come every single day or not at all. It is a conundrum!

Day #189

The incident I am about to describe happened last night but I felt it had to be today's entry. I put the quarter in as a size reference to the screw type object which I pulled out of Josie's left nostril! Yes, it was in her tiny little nose! It was about 9:30 p.m. when Josie ran to me in a bit of a panic and was clawing at her nose. When I realized there was something stuck up there I brought her into the bathroom for better light. I was on the verge of panic myself when I saw that her nose was starting to bleed just a little. It took me only a few seconds to grab the tweezers, pin her arms from flailing, tip her head back, steady her and gingerly extract the object from her tiny little left nostril. Not sure how I got all that accomplished with only two hands, I must have turned into an octopus at that moment. When I saw what had been up her nose my first thought was "where the hell did that come from!?" After a bit of detective work I found that the little bear she had been carrying around was missing its eyes and I bet you anything that is what it is. I don't know how long she had it up there either. Earlier in the day she was sticking her finger up her nose but I didn't see anything at the time. She is none the worse for wear today and honestly I have pulled so many things out of both girls noses I can't tell you how many times. I don't know if that is just one of those kid things that happens to everyone or if my girls have a fascination with putting things in their noses but I would totally be happy with it not happening again!

Day #188

My little tornadoes ended up tearing down a blind slat and Maeve found it very amusing to line up all the drum sticks along it. They stayed that way for quite a while until it became more fun to hold the slat above her head and spin with it like a helicopter.  I had to cut that fun short because I could just imagine Josie getting cut across the face with it. I am such a party pooper!

Day #187

Today instead of a photograph I thought I would share a video. The video is of my Josie girl counting to ten, individuating each of her little fingers and we thought it was so cute how when she gets to number 6 she starts counting with her pinky finger. Josie can count much higher then 10 and probably would have kept going if she had more fingers. She may have some behavior issues but I think she is ready for a classroom and definitely ready for a change of pace. She gets bored so easily during session. We shall see what we come up with in her IEP, if we ever get around to having it?!

Day #186

Maeve was insisting we needed to get in a car and go somewhere today! She dragged her car seat from the deck all the way to the kitchen gate and was getting rather perturbed when we did not exit the apartment. She is so strong! I seriously don't know what I will do when she is 12 years old, bigger then me and as strong as the Incredible Hulk?!

Day #185

 

Like how I was entertaining Josie while she sat on the "tinkle potty"? Yes, that is a diaper. Yes, it is in fact fresh and clean. Yes, we were both wearing one! I had to do something to keep her sitting there long enough to attempt actually using the potty and my silly side took over :D

Day #184

I am the luckiest mom in the world and I know it!

It is all a matter of perspective, strength, and unconditional love. Sadly some parents who were blessed with children do not have these qualities and others who want nothing more in this life then to be parents but cannot have these qualities in abundance. Three instances brought this to mind for me and here they are:

#1: While at prompt care the other day I got to talking with a nurse about my girls, she remembered Maeve from a previous visit, and when the attending doctor overheard that they have autism her first reaction was to tell me "oh, I am so sorry." Why? Why would you be sorry for me when I was given these two beautiful daughters to wrap my world around?

#2: While waiting for my ride at the store this morning with the girls in the cart I met a nice young man who came over to me and had to tell me how lucky I was to have kids and how adorable they were. I came to find out that he and his lady had split up when they wanted to conceive children and found out through testing that he could not. He was so genuine and I felt his sadness.

#3: I just finished reading a confession post and comments through an autism site and the father was saying how he loved his son but couldn't deal with his behaviors any longer and were looking for residential placement so that they could alleviate the stress from their lives. A comment on the post was from a woman who said she could totally understand what he was saying and that she has a son with autism and cannot cope with him any longer either. Cope? These are your children, your blood, you don't just "cope" with them and when you cannot just toss them away to a system that will treat them like a dog in a boarding facility.

I don't understand how so many people cannot wrap their heads around their child's disability and get over it, work through it, live with and love it. It makes me sick to think that there are children of all ages out there with disabilities whose families view them as a burden. Maybe I am just cut from a different cloth but I would sooner die first then give up on my girls, it just isn't going to happen.

Day #183

It was one of those napping kind of days for Josie, doesn't she look so sweet?! It seems she decides to nap on the days that we do not have session as if she doesn't get enough stimulation to stay awake. It could also be that she needs to catch up from all the stimulation she has on other days. Either way I am glad she napped early and hopefully it doesn't mess with her sleep cycle tonight.

Maeve on the other hand has been a go getter all day long, tearing paper, having the giggles, making sure every toy was on the floor, plucking poor Gilbert, and generally keeping herself occupied. That girl is never bored, she always finds something to do.

I asked Cathy last night: "I was wondering if you could shed some light on something that just occurred to me tonight, why would the girls stims and repetitive behaviors increase by 10 fold between 8 and 9p.m. nearly every night? It is like they have a sudden burst of every autistic behavior that they possess?" Her answer seems very logical and I am not sure why it didn't occur to me before, but she states: " It could be due to the collection of stress they build up in their systems throughout the day and, when they become tired at night, they use stimming behavior to self regulate." I wonder if other autism parents have realized this or have seen cycles or patterns in their children's behaviors? Just a curiosity and maybe worth following to find out, could be a paper involved, I know I find my girls fascinating maybe someone else would too! :D

Day #182

Dolly went for a swim in the toilet...again. It seemed like a choreographed joint effort by the girls to get me to open the baby gate by the bathroom with Josie saying "tinkle potty" then to divert my attention when Maeve tried to take down the kitchen gate. I turned away from the bathroom to put the kitchen gate back up at which point Maeve dashed past me into the bathroom and dropped poor dolly face down in the toilet. Having a sprained foot I am not as spry and speedy today as I have been in the past so was not able to reach the bathroom in time to stop the dunking. It is quite comical in a twisted sort of way...just you wait girlies, my foot will heal before you know it and you won't be able to pull these tricky little stunts on mama :D

Day #181

Quite a day so far! As soon as Shelley arrived this morning to begin session I turn around to find Maeve in the litter box with all the sand toys. I am so glad I had just cleaned it out! Session gets underway and I have to go do some paperwork in our apartment managers office and come to find out that my rent should decrease by about $100 dollars, score! After about an hour and a half of session Shelley, Pam and I took the girls swimming. Maeve was a bit better in the pool today, fussy but when she found out I wasn't giving in she settled into being in the water. Only after that did I allow her to go to the hammock. A couple hours of pool time then we head back for our place. When Shelley and I are taking the girls out of the car, heading toward the door, both laden with bags, Maeve bolts! Did I think to drop what I was carrying...NO! I run after her and decide to overextend to grab the back of her dress to stop her, end up taking a bad step, my flip flop breaks, I tweak my ankle and mangle my foot. I had to sit there for a second, firm grip on Maeve, assessing the situation because I was not too certain I didn't break my foot. I traumatized my poor left foot but did not break anything, thank the heavens for that! I cleaned it up, got us some lunch as I hobbled around and have been able to sit a bit with it elevated and it is doing much better. What you cannot see in the picture is how torn up the tip of my pinky toes is as well. Note to self: DON'T RUN IN FLIP FLOPS! In my own defense though I was only thinking about stopping Maeve and preventing her from getting into the street and getting hurt herself. My mind was singly focused and all else was just peripheral.

Day #180

MISDIAGNOSIS!

For about a month now I have been stressing and worried sick about the diagnosis I received over the telephone from an associate of our neurologist. I am going to have some words for them when I process this completely and can speak rationally! I was told that Maeve had Miller-Dieker Syndrome which is related to Fragile X. WRONG! I went with Cathy (thank you I really appreciate your help!) and Maeve to a genetic counselor appointment at Sutter Outpatient Clinics in Sacramento today only to find out that I was given a misdiagnosis over the telephone. What you see illustrated here is chromosome 17 which is what is abnormally affected in Maeve. On the short arm (p) of chromosome 17-13.3 (circled in pen) there is NOT a deletion as is found in Miller-Dieker, there is actually a duplication. Instead of having two as we all do, Maeve has 3. Which can manifest itself as developmental delays and is the most likely cause of her autism. The blood test results for Fragile X:NORMAL, the blood test results for Rhett Syndrome:NORMAL. They found this abnormality when they conducted a blood test called Oligo-SNP Array and found that Maeve has a 284kb gain at 17p13.3. Riddle me this: how can such a fractionally minute amount of extra material on the short arm of a chromosome cause such developmental delays?! I still find it hard to fathom that I was given completely WRONG information by someone from our neurologists office! We were not able to see the geneticist himself today so we will have to go back in November but I am so relieved, I really am! It was suggested that Gerard and I have blood taken for a chromosomal micro-array to determine if one or both of us is a carrier, should be interesting to find out. All in all I have to say it was a smooth trip, a great day, we had a car door opening incident but that was quickly remedied, found out some good news, had great sandwiches from the Sacramento Natural Foods Co-op, and now I am sitting her having coffee and trying to process all the information I have just downloaded :D

Day #179

 

This is another reason we need a talking device for Maeve, the PECs often become a toy for both girls. At least once a day I have to pull an icon out of Josie's mouth since she has found out how fun it is to chew on them. Josie is perfectly capable of asking for something verbally but if I take too long in responding she usually goes to the PECs book, grabs the correct icon to shove in my face and yells her request. Anyways, the PECs book just is not big enough to carry all the icons that Maeve will ever need to use during her lifetime. I am not being a pessimist on Maeve developing speech, I am being a realist, PECs or sign language may be the most functional form of communication that she has and I want her to excel at it. I want to carry on conversations with my girls and I feel the best way to do that with Maeve is to get an iPad with the Proloquo2go software. As of now it is out of my reach and I seriously doubt the school district will purchase one for her but they may surprise me yet. I know we are supposed to have an assessment for Maeve before her next IEP to determine which device the school district will provide. I have this vision in my head that it will be some huge, bulky, impractical squawk box that is armored due to the fact that Maeve is still young and not the most careful child on the planet. I don't know...all I do know is that PECs are great up to a point but once the child reaches an advanced level it becomes more of a hindrance then a help. If I can't have speech in Maeve's own voice, darn it, I want her to speak to me through a talking device!

Day #178

What a terrifically lazy day! So relaxed and it actually feels like we have recharged our batteries. It helps when you take a nap, yes, we ALL napped today! Even the girls needed it and they hardly ever nap anymore. The nap came after we had a very slow, easy morning with stories and play time, then Maeve wanted a bath and proceeded to get more bubbles outside of the tub then she kept in it. I dunked Josie quickly too but she still doesn't want to stay in the tub for very long. After we ate lunch I decided I was too tired to try to fight through the day without some sort of rest so all three of us crashed on the girls bedroom floor with the door closed so I didn't have to worry about where they were. We didn't emerge for at least 2 hours! I might be sorry later on tonight but it felt so good to get some solid sleep. If it ever cools down enough we will take a walk later and the rest of the evening will be played by ear.

Day #177

Food play at its finest! I made spinach and cheese tortellini for lunch and this is what happens to it when Maeve gets a hold of it. It may look like a huge mess but this is progress people! Yes, she even tasted it once her hands were caked in it and didn't seem turned off by it. Granted not enough went in her to fill her up but it is a start and the more positive experiences she has with different foods the more she will end up eating. For a little gal with texture issues and a hyperactive gag reflex I couldn't be happier :D

Day #176

Maeve has figured out she can stand on the table to turn the ceiling fan/light on and off without having to use the wall switch, oh what fun it is too!

My mind has been running non-stop today and among the trillions of thoughts has been a meandering wondering about my girls future. What will it be like for them and for me? Will they be able to function "normally" in society? Will they develop seizures? Will they become self injurious? Will I be able to provide everything they need in the future? I will have to live to be well over one hundred to be able to take care of them because it shatters me to think of leaving their care to someone else. Also in that thought I felt horrible for wanting to live beyond my children. I literally get sick to my stomach thinking about this but as the mother of special needs daughters I have to think this way.

Then I started thinking about when they were first diagnosed and how fearful I was of them being taken from me by the very people that were sent to help. I had this extreme fear that the therapists, doctors, etc. would find me an unsuitable parent to raise autistic children, report me to some agency for child welfare and that they would have my girls taken away from me. It took me quite a while to trust and accept that these people really wanted what was best for my girls and weren't out to prove me unfit, although I always had that feeling of "being watched" whenever some autism professional was in my home.

Some days are harder then others, not because of my girls but because I let my mind run away with me and all these dark, creeping, negative monsters start riding my train of thought. For the most part I go with the flow but every once in a while I get drowned in unanswerable questions. I know this post was random but welcome to my world.

Day #175

 

Today feels like it has been a completely full day already and it is only 2:30 in the afternoon! I registered for my classes this morning and much to my happiness got in the photography class I really wanted! YAY! I was wait listed for the online preparation for college composition class, although I can sign in on the first day of the semester to get an electronic add card, I feel fairly confident I will be able to take that class too. Then Shelley, Pam and I took the girls swimming again. Josie loved the water and looks really comfortable in Shelley's arms there. Maeve did not want to be in the water and seemed tense until the hammock was put up which is when she finally calmed down. That girl loves to swing! We are home now and it is time to relax a bit before round two :D

Day #174

Toward the end of session today we made noodle necklaces with the girls. We used mezzi rigatoni (large ribbed tube pasta) that the girls colored on with markers, well Josie colored,  Maeve we'll just say was quite reluctant. Then they strung the pasta on yarn and we tied it into a necklace for each of them. It was a good fine motor craft for the girls and gave them a little something different to do during session, a creative change of pace.

Day #173

Maybe Maeve will be a librarian one day, she sure has become the book monitor at our house. She wants only certain books on certain shelves and if I change the rotation she gets a wee bit upset. If she doesn't like a particular book she will toss it away from the bookshelf. The Eric Carle book "Papa, Please Get the Moon for Me" always finds its way behind the toy box because it just doesn't fit into Maeve's scheme of things. I have noticed that the Thomas and Curious George books have to be on the same shelf as well as all the Sandra Boynton books have to be together. I like orderliness myself  and have my own quirks but I hope it is not becoming an obsession for her.

Day #172

Maeve and Josie are still in the parallel play stage, each happily in their own zone. Rarely interacting with one another even when mom puts down a toy bin for both to play with. The only time I see them interact during these play sessions is when one snatches a toy from the other and then it becomes a skirmish to see who gets to keep that toy. I have read that by 2-3 years old toddlers are starting to notice one another and the mutual give and take of interactive play should begin. My girls are definitely delayed in that aspect of development and may never fully develop extremely strong social skills but as long as they maintain non-aggressive parallel play I am happy as a clam with that!

Day #171

Thank you very much Curious George for teaching Josie how to use toy cars as roller skates, I really needed her to know that! She was "skating" around the kitchen table saying "rollers-cake" quite a bit today copying her favorite cartoon monkey. I am so glad she was careful and didn't try to go very fast but it couldn't have been too comfortable on her feet. Just when I thought an educational program was safe for them to watch it starts teaching them how to be daredevils! :D

Day #170

 

Catalogs do not stand a chance around Maeve! Read them while you can, don't take your eyes off of them until you are absolutely finished because they are goners once they get into her hands. I have often said, jokingly of course, that I was going to start my own confetti business and profit from Maeve's paper stimming. She has been a paper shredder since she could get a hold of it herself, the earliest shredding incident I think she was about 6 months old. I used to think how cute it was but now I shutter when I hear paper being ripped and have to run to find out what it is being rendered into teeny tiny pieces...Is it a bill? No...Is it money? No...Is it a book? No...Is it something that can never be replaced? No...Okay, go for it chicky, have at it, enjoy! :D

Day #169

 

I just had to share this photograph, I did not take it of course, but I thought it was the dreamiest, most special picture ever! I found this particular picture on the SD card in my beautiful, beloved, late mother's camera. I don't even remember her taking this but I am so glad she did.

We took the girls swimming again today, thank you Shelley, Lauren, Ginger and all the kiddos, it was fun! Even if Maeve did fuss a bit wanting the hammock :D

I have filled out the application for Habitat for Humanity, gathered most of the needed documentation and written a 5 page letter as well. I have a really good feeling about this, but even if I don't get into a house (still have my fingers crossed!) I won't be bitter about it because I know that any family that is chosen will need it as much if not more then we do. I will keep you updated.

Day #168

Shelley taught Maeve how to swing the jump rope while she was watching the girls for me this evening! Both girls were kept very active and even a bit hyper, which I saw when I walked in the door, but I so appreciate you watching them for me Shelley! I attended a Habitat for Humanity meeting and picked up an application for the Parrots Ferry subdivision. Lots of paperwork and proving my need for a home but I talked with a few members of the review board after the meeting and they kept telling me to apply and not be discouraged, so I will! It is a subdivision of 1200 square foot duplexes, 2 story, 3 bedroom, 2.5 bathroom, patio, solar powered, with a donated whirlpool range and fridge in each. This could be the start of a new life for me and my girls, we NEED that! Can't get my hopes up too high, just fill out application, gather papers needed and present my case in the most convincing way possible. Wish us luck!

Day #167

As I was making us a special treat in the kitchen this is what I saw when I turned around, what a forlorn look! The barrier works, even though Maeve can squeeze her limbs through, it still keeps her from climbing onto the stove or across the counter. Gives me some much needed peace of mind but now to do something about the baby gate which is the current target of choice... I'll let you know.